Anyone else have a hemorrhagic AND ischemic strokes?

[Holley]

So, in the past year, I've had 2 strokes. My first was caused by a clot as I was subtherapeutic for some time. The second in February was caused by a bleed. The neurosurgeon didn't want me put back on any anticoagulation (it increases the risk of another bleed). My hematologist, who I think very highly of, challenged that given my artificial valve and my APS, I needed to be on something. He told me at my last appointment, that we were in "uncharted territory." That made me nervous. In the hospital, my attending doc told me I needed to decide which I wanted to prevent: another clot or another bleed. Anyone else ever had this happen? What protocol did you follow?

[Ozchick]

No idea, I'm sorry-but I really don't envy the position you are in.

[KellyInTexas Administrator]

Obviously you have to be anti coagulated- you have APS. The neuro surgeon surely understands that.

If you are we’re under coagulated for too long, why? Is your INR difficult to keep in range?

Why did you then have a bleed? Was the INR too high, or was there another structural problem, perhaps a result of the prior stroke?

Has your Hematologist spoken to you about Lovenox twice daily? You must have it at high intensity. If you feel the tingling lips, weak arms...you know it isn’t suiting you or isn’t high enough intensity.

Is Lovenox at a higher intensity suitable for the mechanical valve? I have no idea... worth asking? The advantage is you can more safely add a bit of anti platelet than you can with warfarin. This I think would prevent a clot forming at the mechanical valve site and be an advantage for the brain . It’s a fixed dose, so no swings.

[Lure2]

So you have been without anticoagulation for some time? I know how difficult you said it was to selftest as you had Lupus Anticoagulant. I wonder if you have tried parallelltesting correctly to be aware of the differences. When you had the bleeding were you on Warfarin at that time?

Also I wonder if you are in contact with a Specialist of Autoimmun illnesses who also know both APS and mechanical valve-issues? Must be difficult I understand but important for you no doubt.

Your attending Doc is he the Specialist/Hematologist? You should decide of a clot or a bleed??

[MaryF Administrator]

Hi, it is really important that your medical team talk to each other, some with Warfarin as their main drug, do not do so well and instead or as well as have to have Fragmin injections, some are just on Fragmin, I hope they can come to a sensible decision for you, and get to the bottom of it all, as clearly you need something. I hope you can be helped with this as soon as possible. You have had a great reply form KellyInTexas who has offered great advice. MaryF

[Ray46]

I'm sorry, wish I had something more positive to say, but sometimes there is no good news.

Strokes damage the brain, damaged areas of brain are susceptible to bleeding, you can even end up bleeding and clotting at same time. This has been known for _decades_ - I recall a member of staff with a history of very nearly losing a husband to exactly this scenario back when I was in school, which is itself >30yrs ago.

You are not in "uncharted territory" and the docs (should) dammed well know that, where you are is between a very large sharp rock and a very hard place, and medical science does not have any answers ("uncharted territory" is not the same as "we don't know the way out"). Mech heart valve complicates further because only warfarin is proven effective with those, but warfarin is also worst for brain bleeds.

Whoever said "decide which I wanted to prevent: another clot or another bleed" is being blunt but absolutely accurate and honest (in my opinion). For me, I prefer that from a doctor and I respect it, but others may feel differently and not wish to know.

If it was me, I'd probably ask for heparin (Lovenox) as best compromise between bleeding risk and anti-coagulation record with mech heart valves, but that compromise may just be setting you up for a greater chance of an incident either way. Or come off everything and let nature take its course, or choose warfarin as best chance of avoiding clot (but worst for bleeding). There are no good or easy or reliable paths out from the place where you are, but all our paths end with the same destination sooner or later.

[KellyInTexas Administrator in reply to Ray46]

As we are not medical doctors ourselves, we can only share what our experiences have been as APS patients.

Your , “ member of staff ‘s husband” very likely did not have APS, so conversations would not be exactly the same. Also, many things have changed in 30 years.

The mechanics of the brain and the clotting cascade have not, and certainly this makes it very challenging. This is where your analogy of a very sharp rock and a hard place is spot on! It certainly is.

I will tell you that ,” all the data is not yet in.”

I still have many questions to ask. I have a surgical team to yet recommend. I have a medication combination to look at I have not yet mentioned.

I’m waiting for Holly to answer the first questions I have put forth, in her own time.

“Coming off of all coagulation and waiting for nature to take its course “ was not a question implied in her post. We are certainly not there yet!

This is now an official investigation at the highest level! I consider it criminal that it’s being handled potentially recklessly. And wouldn’t you know... it just happens to be set... in Washington DC.

Holly...We are on it!

[Jeantabs]

I had a simultaneous subarachnoid hemorrhage and an acute ischemic stroke, caused by a clot in the carotid artery, removed by thrombectomy. I was on aspirin and clopidogrel for the first 6 months but had another small bleed. Obviously not suitable for warfarin, so managed on clopidogrel and hydroxychloroquine etc. As you say, we are a bit of enigma.

[Holley in reply to Jeantabs]

Back in December 2005 during my first attempt at heart surgery (before i was diagnosed with APS), I got nicked in my carotid artery while the anesthesiolgist was inserting the central line. It was noted that my blood was "acting strange." I developed a hematoma that had to be evacuated by a vascular team. Hematology was brought in at that time for a consult. Shortly there after, I was diagnosed with APS and a bleeding disorder. I went to another lab/doctor for a second opinion. He ruled out the bleeding disorder.